Wednesday, May 29, 2013

World MS Day And An Update

Today is World MS Day.  In honor of this day I thought I would share an update about me and my MS.  I realize it has been awhile since I've done a "health" update which I guess means things have been pretty good.

May also happens to be the month when I have my annual MRI.  A few weeks ago I had an MRI of my brain and neck both with and without contrast.  It takes about an hour so it is a good thing the MRI doesn't really bother me.  

A few days after that I went for an appointment with my MS neurologist.  Would you believe it had been an ENTIRE YEAR since I had last seen him?  He couldn't and I don't think he was very happy!  Ha!  Actually I think he was just surprised b/c in the first few years of my diagnosis I saw him quite frequently b/c it seemed like there was always SOMETHING going on.  Finally my MS seems to have settled down (knock on wood).

My neurologist told me that my MRI looked great.  No changes!!!!!!  Woo Hoo!!!!!  That is what us MS'ers want to hear after an MRI.  Changes/new lesions are bad.  


So the reason I hadn't gone to see my neurologist for a year was mainly b/c I was doing ok and also b/c my health insurance changed at work and w/ my new plan I have a huge deductible and have to pay a percentage of all my visits until I "max out."  Well I don't have an extra $1,500 laying around so I put it off.  But I finally decided to bite the bullet and go b/c I wanted to switch to one of the new oral medications for treatment.

For those of you who don't know, for the past 4.5 years I've given myself an injection once a week.  Up until recently the only MS treatments where injections.  Not fun.  But you do what ya gotta do.  Until now. . . now there are new oral meds and they are working really well for people.  I passed on the first oral med that was released last year (for a number of reasons and if you really want to know feel free to ask in a comment - don't want to bore the rest of you).  


In March Tecfidera (formerly known as BG-12) joined the ranks of first-line, disease-modifying therapies approved by the U.S. Food and Drug Administration to treat MS.  The exciting thing about this medication is that it is not a new med.  It has been used since the 1990s in Germany for treatment of psoriasis which means we known some of the longer term effects (if any).  

So I took my first dose yesterday.  This treatment requires taking two pills per day - one in the morning and one in the evening.  For the first 7 days I am on a half dose to give my body a chance to adjust to the treatment.


This medication (like all/most medications) does have some potential side effects.  The two main ones are GI issues and flushing.  So it is recommended to take the medication w/ a full meal and high fat foods are better b/c it slows the absorption of the med.  This is a hard adjustment for me b/c I don't usually eat a big breakfast.  But for the time being I will eat w/ it b/c I certainly don't want to have a stomach ache from it (or worse if you know what I mean).

With the flushing people can take a baby aspirin or benadryl to help but I guess for most people it usually stops after a few weeks.  I did have some major flushing yesterday.  It was the weirdest thing.  About 4 hours after my morning dose my ears got really hot.  Then my arms turned bright red and looked sunburned.  They were so hot and itchy I couldn't stop scratching.  After about 20 minutes it was gone and I was fine.  I didn't notice anything at night (b/c I was probably sleeping when/if it happened).

For anyone reading this that is considering switching please feel free to ask me anything about it.  I'll give another general update in about a week when I switch over to the full dose.


Wow this post got really long!  On a more personal note. . . I want to thank all of you, my donors, for your generous donations over the years.  It is absolutely amazing to me the advances in treatment for MS in the {almost} 5 years since I've been diagnosed.  Think about it - people hearing the words, "You have MS" today will be given the option to take oral meds. . . NO MORE INJECTIONS!  How freaking cool is that!?  Take it from me, someone who have given herself injections for almost 5 years - it is pretty awesome!  

I just want everyone who has donated to MS to know that YOUR donation makes a difference.  This is a disease that can be cured.  I'm sure of it.  The research has led to so many treatment options that are saving peoples' lives.  People w/ MS are much "healthier" today then they were years ago and this is due to these amazing treatment options now available.  So please don't ever think that your donation doesn't make a difference - 5 bucks, 25, 100 - it doesn't matter.  Every single dollar helps.  So thank you.  Thank you for helping to change the course of my treatment.  Thank you for allowing me to swallow a pill instead of doing an injection.  It may not seem like a big deal but it is.  It is a HUGE deal.  Take it from me.

P.S. I'll be walking 50 miles for MS in September at the MS Challenge Walk.  Go here to view my personal fundraising page and make a donation.  I'm sure I've convinced you by now (if you made it this far)! 

P.P.S.  I AM NOT A DOCTOR.  PLEASE SPEAK TO YOUR DOCTOR BEFORE MAKING ANY MEDICATION/TREATMENT CHANGES.  THIS POST REPRESENTS MY PERSONAL EXPERIENCE AND I'M NOT ADVISING THAT ANYONE ELSE CHANGE TREATMENTS W/O DISCUSSING IT WITH A DOCTOR FIRST!!!!!!












9 comments:

  1. Happy World MS Day!!!! I will be wearing orange to my infusion later today!

    I'm happy to hear of the strides being made for MS. When I worked in apheresis, we would do plasmapheresis on many pediatric MS patients', but I'm not sure that's something done often in the adult world.

    Hopefully the flushing side effect goes away within a few weeks. Now that you've started this new medication, are you able to stop the daily injections?

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  2. WOOO! Congrats to a no change MRI! That's amazing...I'm so glad for you!

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  3. Glad that you haven't had any changes over the past year. That is awesome! I hope your new medication works out too!

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  4. Congratulations on your MRIs! That's great news. My friend Ann is on Gilenya and loves it. She had her first 'good scan' ever (9 years with MS) after being on G for a year.

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  5. So happy you've had no changes over the past year. That's fabulous!

    Good luck with the new medication.

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  6. Congratulations - that is awesome news!!

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  7. 50 miles?! Holy cow that is long way and i'm so proud of you.
    Best of luck with your new medications.

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  8. I have been taking the once a week injection for a long time now...I am not going to change to oral drug for now. I wish you luck with it though. Yay for walking that far too

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  9. Sounds like a great alternative! My mom has to get those MRIs years and they keep finding white matter and lesions but have no clue what's going on with her. It's scary that she doesn't have a diagnosis for anything after all of these years.

    I finally donated! Sorry it's taken me so long.

    Random side note, my last job entailed building out the websites like the one I just donated through! It's a company that many charitable events use. I used to have to test those transactions (like I just made) and I don't miss it ;)

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